Living with HIV can be tough enough without having to deal with a loved one’s
ill-health. Amanda Elliot reports
It is ironic that after surviving the trauma of diagnosis and even Aids-related
illness, people with HIV can suddenly find themselves thrust into the role
of carer. There are no statistics on how many people with HIV act as carers,
but a report by the charity Carers UK due out this month will highlight that
316,000 carers are ‘permanently sick or disabled’. Of these, 124,000
are caring for 50 hours a week or more.
Dave Clark, policy officer for Carers UK, said: “Their disability may
mean that they need additional support in their caring role. Carers with a
disability have rights both as a disabled people and as carers.”
In poor health
Being a carer does few favours for your health. CarersUK found those who provided
high levels of unpaid care for sick or disabled relatives and friends were
more than twice as likely to suffer poor health themselves.
Anxiety, depression and loss of confidence are common, particularly at the
start of the caring process and once caring had ceased. Carers are often on
call 24 hours a day, with one in four carrying out physically demanding work
like bathing, lifting and dressing. This, coupled with the constant worry
of the relative or loved one coming to harm, suggests a carer’s lot
is rarely a happy one. Add in your own HIV health needs, and life suddenly
becomes a relentless slog through the health and social care system. Unexpected
problems can also arise.
Robert Atherton, 43, was forced to disclose his HIV status to his sister and
his father’s physicians after his dad contracted MRSA in hospital. “I
had to explain why I was taking extra precautions. My sister didn’t
handle it well.”
UKC trustee Rosie Fraser, 44, was diagnosed with HIV in 1993.
With just 36 per cent vision in one eye, she struggles with mobility. But
on top of this she single-handedly cares for her elderly parents. Her mother
has Parkinson’s disease and only recently moved out of their Wolverhampton
home into residential care. Her father has diabetes and had his leg amputated
in 2003. Her experience has left her distrustful of support services and agencies.
She doesn’t claim carer’s allowance fearing it will affect her
incapacity benefit and DLA. Her parents receive nothing.
“I have never had any help or respite care from any of them. Whenever
people from social services or occupational health services visited they were
only really interested what we could afford to pay. Often they tried to bully
my parents.”
“In the last couple of years it’s been one thing after another.
HIV has always come second. I don’t go to the doctors as often as I
should or as often as others; it sort of pales into background.”
Her mother’s condition went undiagnosed for many years and was variously
put down to panic attacks, depression and Alzheimer’s. Rosie has dealt
with the endless round of GP, psychiatrist and hospital appointments and kept
on top of all the medication: none of which was hers. All this while keeping
house and caring for her parents.
Rosie tells of the struggles she had getting her mother upstairs and the battle
to find a suitable stair-lift after her father was discharged from hospital.
She angrily recalls how after one of her mother’s frequent falls, ambulance
staff threatened to notify social services for “one too many callouts”.
“They were basically implying that we were battering her. It was so
hurtful.”
“Because of my eye-sight I have to keep the house very organised so
I know exactly where to find things.
“I still find it hard emotionally. My dad never complains but I rarely
get a break.” Often it is the little things that place Rosie under most
stress. “Lloyds Bank made me feel like a criminal trying to obtain money
on his behalf - even though I had a letter signed by him and go in regularly.
“I am not on treatments nor do I want to be as I’m scared they
will affect my eyesight. I am healthy with my HIV but I wonder what will happen
when they die and whether I am really only postponing my illness because I
have to keep going for them.”
Rob Sratton was diagnosed with HIV in October 2002. He is
caring for his terminally ill mother with his father who suffers from anxiety.
“Over two years my mother has suffered heart failure; two strokes; ulcers
in her arteries which resulted in her contracting MRSA which led to gangrene
in one her feet; plus she has become diabetic. The hospital wanted to amputate
her legs but they were unable to do this as she would not tolerate the operation.
“My father is also finding it very hard to come to terms with losing
my mother after 57 years together.”
Robert says support services are sometimes slow to respond. When a faulty
hoist broke down with his mother in it, there was no back-up service available.
“Luckily I managed to sort the problem but we have had to move her manually.
“Respite care is especially difficult to access given my mother’s
condition. When a place was found they had to send her home after three days
as they were unable to care for her.
“I have little time to address my own condition, plus my partner also
has HIV and we live with my son. My clinic has not been very supportive; they
are aware of my situation and the stress I am under.
“Yet when I requested some more acyclovir I was told to go and see my
GP so the hospital could save money for the more expensive drugs.
“My GP was less than impressed and we spoke about the options of transferring
to another clinic. When I mentioned this to my clinic I was told: “Why
not do us all a favour and go elsewhere. It will make our jobs a lot easier.”
Nicole, 36, met her partner at an HIV support group. She
had dated him for just four months when he was diagnosed with stage 4 Non-Hodgkin’s
Lymphoma. He died seven months later. “At first doctors mistook his
symptoms as immune reconstitution; this combined with serious blunders meant
his condition was diagnosed too late.”
With no friends or family to look after him, Nicole became his carer. She
juggled shopping, cooking, cleaning and caring with full-time studies.
“I was his carer longer than I was his girlfriend. It’s difficult
when the person you love is suffering and sometimes takes it out on you. Your
try not to take it personally but sometimes it gets too much. Your whole life
starts to centre around one person and his illness and your own needs are
put on hold.
“I don’t know what I would have done without my counsellor at
the HIV clinic. He was my life-line.”
As a full-time student she was not entitled to the carers allowances. During
his illness, Crusaid repeatedly told him he would get a hardship grant but
it never came through and his £15-a-week disability allowance was never
increased.
“He was in so much pain but pain relief was completely inadequate. He
had been an IV drug user 20 years ago, but he was clean then. I think this
influenced the way he was treated.
“In retrospect we shouldn’t have been so polite. I should have
fought harder for him; too much respect for doctors was part of the problem.
“Afterwards I found it hard to continue; it was a very intense seven
months and then there was just me. I tried to keep it together but a few months
later I realised I was exhausted.
Robin Ramsdale was UKC’s welfare and benefits manager:
Or,
CarersUK CarersLine: 0808 808 7777 Wed-Thursday 10am-12 noon and 2-4pm.
info@carersuk.org
